Links to further information

The following are links to some sites which may be useful if you are searching for information on Palliative Care.

Resources to support good palliative and end of life care

Scottish Government Guidance on caring for people in the last days and hours of life: Guidance: Caring for People in the last days and hours of life
Future Care Planning: The Scottish Government and Healthcare Improvement Scotland have published information about Future Care Planning, which is available here: Future Care Planning Toolkit
The Supportive and Palliative Care Action Register (SPAR)
The Key Information Summary.
Recommended Summary Plan for Emergency Care and Treatment (ReSPECT), a UK-wide initiative to support Future Care Planning (FCP) and the FCP process.
The Good Life, Good Death, Good Grief initiative has a website providing links to further information, resources and support for professionals, carers and anyone directly affected by death, dying and bereavement.
The Supportive and Palliative Care Indicators Tool (SPICT)
The Scottish Palliative Care Guidelines
Information about Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) policy for adults: for staff; for members of the public
General Medical Council guidance: Treatment and care towards the end of life: good practice in decision making.
Royal College of General Practitioners: Palliative and end of life care toolkit.
Macmillan Cancer Support: Best practice in palliative and end of life care for cancer

Available data and evidence

The Marie Curie End of Life Care Atlas is designed to provide insights into care provision in local areas.
The Nuffield Trust are running several projects looking at patterns of care at the end of life.

Measurement and Impact

NHS Healthcare Improvement Scotland (HIS) has published a set of Palliative Care Indicators.
A Joint Improvement Team Webex on palliative and end of life care explores evidencing impact.

Education and Information

The NHS Education Scotland TURAS website includes resources relating to palliative and end of life care.
NHS Education Scotland has published: Palliative and end of life care: enriching and improving experience, a framework to support the learning and development needs of the health and social service workforce in Scotland
End of life care for all (e-ELCA) was developed in England but is available to NHSScotland staff, and aims to enhance the training and education of health and social care staff involved in delivering end of life care.
The Scottish Partnership for Palliative Care produces a monthly e-bulletin providing up-to-date information about policy, practice, education, research and news relating to palliative care in Scotland.
The NHS Greater Glasgow and Clyde Managed Clinical Network website provides palliative care information for professionals.
NHS Education Scotland Resources for Professionals on Bereavement – Support Around Death

Palliative Care in Care Homes

Relevant resources on palliative care for those working in Care Homes have been signposted on the Pearl Trees website.
Making Good Care Better, national practice statements for general palliative care in adult care homes in Scotland.

Also relating to palliative care in care homes, the following resources were published by the English National End of Life Care Programme, and provide some information and background:

Supporting people to live and die well: A framework for social care at the end of life
The route to success in end of life care – achieving quality for social work
End of Life Care in extra care housing - a practical toolkit for managers and care and support workers in extra care housing schemes illustrating how extra care housing staff can talk about end of life care with residents and work to ensure their wishes and preferences are met.

The Association of Palliative Care Social Workers (APCSW) website outlines the role of a palliative care social worker.

Policy Context

Scottish Government web pages on Illness and Long-term Conditions
Strategic Framework for Action for Palliative and End of Life Care
Living and Dying Well, a national action plan for palliative and end of life care in Scotland
Living and Dying Well, building on progress
Good Life, Good Death, Good Grief is an alliance of individuals and organisations who believe that Scotland should be a place where people can be open about death, dying and bereavement. The Good Life, Good Death, Good Grief websiteexplains the rationale for ‘health promoting palliative care’ – the need for more openness about death, dying and bereavement.

Children and young people

ACT
Children and Teenagers Scottish Cancer Network (CATSCAN)
Children and Young Persons Acute Deterioration Management (CYPADM)
Children’s Hospice Association Scotland (CHAS)
CLIC Sargent
Managed Knowledge Network: palliative care of children and young people in Scotland
Babies,Children & Young People’s Palliative Care Community of Practice
REACT - charity working to improve quality of life for children with life-limiting illnesses living in financially disadvantaged households
Together for short lives
Winston’s Wish

Information, support and networking for patients and carers

Information, support and networking for professionals

Professional Associations

Related National Workstreams

Research

Standards, Guidelines and Regulation

Voluntary Hospices